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23 Nov

CFNZ Board Update - November 2019

23 November 2019

The first board meeting of the new board was held in Auckland on the 23rd of November.  As my first meeting as the chair, I was mildly nervous about how it would go but I needn’t have worried.  The energy and enthusiasm of our new younger board members mixed with the wisdom and strength of the ‘older’ hands, created a positive and action focused atmosphere. 

Highlights from the meeting were:

  • The board approved a significant ramping up of the programme to get more public support for the doubling of Pharmac’s budget – an essential prerequisite for the funding of new drugs like Kalydeco and ultimately the new Trikafta.  This programme will aim to significantly increase the number of signatories to the petition (there is currently just under 17,000) but also to directly target politicians and build political support for a budget increase.  With the petition closing on 26th March of next year, this project is at a critical stage, so there is much work to be done over the next three months.  This will require a coordinated effort by those health related support organisations whose members are seeking Pharmac funding for lifesaving treatments.  CFNZ will take a leadership role in the development of a unified communication strategy and will work alongside Patient Voice Aotearoa to support the collective.  As a related initiative, it is great to see the Kalydeco petition being presented to Parliament with 11,000 signatures.  A huge thanks to Eddie and Emma Porter for their efforts to get this going and to the wider community for encouraging others to sign.


  • The board signed off the terms of reference for the organisational review.  This is going to be one of our most significant bits of work over the next year with potentially far reaching consequences.  It involves a detailed look at our organisational structure and systems to ensure that we are set up to effectively deliver what our community need over the next few years.  A team led by Ed Campion will be finalised over the next few weeks and will begin some needs and options analysis in the New Year.  You can expect to hear more from this group about the planned work and there will be opportunities for you to have your say.


  • The board has also approved funding to allow the immediate commissioning of a report on the social and economic cost of CF.  A big thanks to those branches who have chipped in to help make this happen.  This is an significant research project which will provide evidence to support our campaign to persuade Government that money spent up front to keep people with CF healthy and out of hospital can be more than off-set by the savings in the costs of hospital admissions and other treatments.


  • The CFNZ books continue to remain sound with a capacity to support what is an ambitious work load for the year.  However, we are seeing some pressure on income, particularly in corporate sponsorship and individual giving – a reflection on the current uncertain economic times perhaps.  Jane and her team have been doing a magnificent job in this fundraising space but it’s a reminder that we will need to continue to put lots of effort into this.